This Is MS Multiple Sclerosis Community: Knowledge & Support

Welcome to the world's leading forum on Multiple Sclerosis research, support, and knowledge. For over 10 years, This is MS has provided an unbiased community dedicated to Multiple Sclerosis patients, caregivers, and affected loved ones.

In the primary per protocol analysis, progression in disability was worse than that predicted and worse than that in the untreated comparator dataset

Cochrane report?

there is high quality evidence that both natalizumab and IFNß-1a (Rebif) can reduce relapses and disability progression compared to placebo; and they are also more effective than IFNß-1a (Avonex) in people with RRMS.

It is important to consider that the efficacy and the risk-benefit of all these treatments beyond two years are uncertain, and this is a very relevant point for a lifetime disease such as MS. Thus, studies on the long-term efficacy and safety of immunotherapies for MS are urgently needed. It is also worth considering that more than 70% of the included studies were sponsored by pharmaceutical companies.

Advertisement

Cece wrote:What about the British risk-sharing scheme data? http://www.bmj.com/content/339/bmj.b4677.fullIn the primary per protocol analysis, progression in disability was worse than that predicted and worse than that in the untreated comparator datasetCochrane report?

The problem with this is that they are using a historical control group vs. an actively recruited group which may not be population-representative. Maybe Canadian patients are different from European patients. Maybe the disease has changed over time. Maybe there is a selection bias in who consents to the study.

Look at how many patients got excluded from the analysis:

only 1479/5583 patients had complete data.

Nonetheless, the point is well taken that these drugs may not be very effective in the long run. I still don't think Dr. Embry is justified in boldly claiming that these drugs are worthless when the overall evidence suggests otherwise.

It is important to consider that the efficacy and the risk-benefit of all these treatments beyond two years are uncertain, and this is a very relevant point for a lifetime disease such as MS. Thus, studies on the long-term efficacy and safety of immunotherapies for MS are urgently needed.

I agree with this, but these studies are difficult to do

It is also worth considering that more than 70% of the included studies were sponsored by pharmaceutical companies.

[/quote]

Sigh...that's the world we live in. There is no solution to this other than to police pharma and investigate all of the claim and fine them for any signs of dishonesty

This thread was originally about the data, so I thought, from the Buffalo phase 2, not CRABs, but it it very probable that I missed something.

stray thoughts: cherry-picking is OK for NIS and drug results. But don't start on these studies. One might conclude that the publication bias caused cherry-picking towards negative results (normal practice being the opposite), and that could never happen. Besides, real men just omit publication.

Nonetheless, the point is well taken that these drugs may not be very effective in the long run.

What? Good thing in my country they don't allow them to be prescribed, even to privately insured people, for SP or PP. People would not want to be charged all that money for something that only kept them a little bit out of a wheelchair.

centenarian100 wrote:It is not either drugs or CCSVI de-stenosis. Prof Zamboni describes MS as a multifactorial disease and treats it using drugs as well as de-stenosis.MarkW

I was talking about Dr. Embry rather than Dr. Zamboni.

Hello Centenarian100,Dr Embry is a PhD Geologist who has studied MS because his son has MS.Prof Zamboni is director of a medical department at a Italian Univesity. He discovered CCSVI syndrome after his wife was diagnosed with MS and has published many peer reviewed papers on the subject.Prof Zamboni describes MS as a multifactorial disease and treats it using drugs as well as de-stenosis.I have no problem with you critiquing the use of CCSVI therapy but please try to be vaguely scientific and start from the view of the discoverer of CCSVI syndrome not quotes from the internet.To remind other readers:

MS as a multifactorial disease and pwMS may benefit from drugs as well as de-stenosis

You do realize that the article you link to describes a case in which Big Pharma self-policed and exposed a researcher publishing questionable data, right? And they apparently fired the offending researcher.

In other words, this article describes a case in which Big Pharma is the victim of a sloppy and/or corrupt researcher, not an instigator. And it also seems they did the right thing by investigating and firing the offending researcher, and publicizing the problem. So, if anything, this puts Big Pharma in a sympathetic light. Presumably not your intent.

I guess another lesson could be: bad science happens, even when it doesn't benefit Big Pharma or hurt patients, and all scientific results should be considered speculative until they've been independently replicated.

Also, please provide evidence of (major) MS advocacy association executives enriching themselves at the expense of pwMS. This is a frequent accusation, but to my knowledge it is baseless. As someone who makes yearly contributions to NMSS and sometimes other MS organizations, I'd like to know if you have evidence that demonstrates an actual problem.

Ummm...I wouldn't call it "self-policing." GSK did not want to publicize this, but bloggers in China did, after a whistle blower exposed them on June 4th. Then, GSK had to come forward with their internal investigation.

The existence of the internal investigation became known over this past weekend after blogs in China wrote about the development. This prompted three top Glaxo scientists – John Elliott, who is vp of chemistry at the R&D Center in China; Min Irwin, vp of medicine development, and Marina Zvartau-Hind, who heads neuroscience development - to issue an internal memo in hopes of quelling speculation.http://www.pharmalive.com/glaxo-probes- ... emplmoyees

whatever. I think it's OK for caretakers and pwMS to question the research which is based on EAE, and does not translate in humans with MS.So does Dr. Lawrence Steinman, creator or Tysabri, who urges caution-calling the drug "a massive failure" because mice didn't get PML. http://www.iom.edu/~/media/March%2028-2 ... einman.pdfit doesn't mean I have a tin foil hat, (yet) But I am certainly thankful for the internet.

cheerleader wrote:Ummm...I wouldn't call it "self-policing." GSK did not want to publicize this, but bloggers in China did, after a whistle blower exposed them on June 4th. Then, GSK had to come forward with their investigation.

The existence of the internal investigation became known over this past weekend after blogs in China wrote about the development. This prompted three top Glaxo scientists – John Elliott, who is vp of chemistry at the R&D Center in China; Min Irwin, vp of medicine development, and Marina Zvartau-Hind, who heads neuroscience development - to issue an internal memo in hopes of quelling speculation.http://www.pharmalive.com/glaxo-probes- ... emplmoyees

I can't read the stuff behind the Times paywall about the origin of the scandal, but I agree that it's unlikely GSK would have publicized their investigation without some prompting. It's embarrassing, at least.

At any rate, from what I can read these appear to be shenanigans in fairly basic research, not in Phase 2 or 3 clinical trials that are trying to get a drug approved by the FDA. In other words, it seems like GSK itself has a lot to lose from this kind of error going unchecked. My point is that this seems like a "researching trying to make a name and/or bonus for himself" kind of screwup, rather than a "greedy big pharma trying to get ineffective drug approved" kind of screwup. And as such, doesn't really seem consistent with its context in the prior posting.

cheerleader wrote:whatever. I think it's OK for caretakers and pwMS to question the research which is based on EAE, and does not translate in humans with MS.So does Dr. Lawrence Steinman, creator or Tysabri, who urges caution-calling the drug "a massive failure" because mice didn't get PML. http://www.iom.edu/~/media/March%2028-2 ... einman.pdfit doesn't mean I have a tin foil hat, (yet) But I am certainly thankful for the internet.

Well, even without this incident it's both fair and wise to question research, whether it's based on EAE, CCSVI, bee stings, or whatever. And independent replication is one of the best ways to do this questioning. No tinfoil hat needed.

ScutFarkus wrote:I guess another lesson could be: bad science happens, even when it doesn't benefit Big Pharma or hurt patients, and all scientific results should be considered speculative until they've been independently replicated.

Also, please provide evidence of (major) MS advocacy association executives enriching themselves at the expense of pwMS. This is a frequent accusation, but to my knowledge it is baseless. As someone who makes yearly contributions to NMSS and sometimes other MS organizations, I'd like to know if you have evidence that demonstrates an actual problem.

Anything less than four stars shows me that the association's executives are enriching themselves at the expense of pwMS: Executive compensation should be more closely tied to outcomes/goals, such as 1) Increase in revenue (more grant writing, better grant writing, increase in donations) and 2) Decrease in overall expenses to include executive compensation (look at 'total' compensation including legal, accounting, and PR fees billed to association) and pension contributions, health insurance, and other benefits.

Also, dig deeper into IRS Form 990 to find actual dollars paid in executive compensation which details this enrichment. This association has had years to improve; possible solutions are more board oversight and/or new officers hired. My SS check is $752/month and Medicare could be better, so yeah... they're enriching themselves.

The NMSS received three out of four stars, better than the MSAA. This link, which comes from using the search keywords "multiple sclerosis," shows all the associations in the Charity Navigator site. There might be some better options for your donations; take a look at some of the associations that received four stars:

ScutFarkus wrote:Also, please provide evidence of (major) MS advocacy association executives enriching themselves at the expense of pwMS. This is a frequent accusation, but to my knowledge it is baseless. As someone who makes yearly contributions to NMSS and sometimes other MS organizations, I'd like to know if you have evidence that demonstrates an actual problem.

Anything less than four stars shows me that the association's executives are enriching themselves at the expense of pwMS: Executive compensation should be more closely tied to outcomes/goals, such as 1) Increase in revenue (more grant writing, better grant writing, increase in donations) and 2) Decrease in overall expenses to include executive compensation (look at 'total' compensation including legal, accounting, and PR fees billed to association) and pension contributions, health insurance, and other benefits.

Also, dig deeper into IRS Form 990 to find actual dollars paid in executive compensation which details this enrichment. This association has had years to improve; possible solutions are more board oversight and/or new officers hired. My SS check is $752/month and Medicare could be better, so yeah... they're enriching themselves.

Thanks for the links, but I gotta say, even as an engineer I find it really tough to decipher the rating scheme used by charitynavigator, and it seems a little wonky at best. For example, if I'm reading it right (which isn't clear given the awkwardly-worded jargon-filled explanations), their "Program Expenses Growth" rating downgrades a charity if the total amount they spend on services decreases or grows too slowly, even if this is a result of their overall budget decreasing or growing slowly. I don't get that. In general, I don't see why "growth" metrics are very relevant to a charity's assessment. Growth is nice, but a right-sized charity shouldn't be penalized, nor should one that is, for example, reducing its focus.

I read somewhere CharityNavigator intends to start evaluating charity effectiveness and outcomes, which seems like it would be a good step in the right direction, since obviously a charity could collect lots of money and have low overhead, but spend the money on proven-to-be-worthless programs (e.g. abstinence education).

We know that many donors continue to be concerned by what they believe to be excessive charity CEO pay. Many donors assume that charity leaders work for free or minimal pay and are shocked to see that they earn six figure salaries. But these well-meaning donors sometimes fail to consider that these CEOs are running multi-million dollar operations that endeavor to change the world. Leading one of these charities requires an individual that possesses an understanding of the issues that are unique to the charity’s mission as well as a high level of fundraising and management expertise. Attracting and retaining that type of talent requires a competitive level of compensation as dictated by the marketplace. While there are nonprofit salaries that we would all agree are out-of-line, it is important for donors to understand that since the typical charity CEO earns roughly $130,000, a six-figure salary is not necessarily a sign of excessive pay for a mid to large sized charity (defined as charities of $1 million or more in revenue).

It then goes on to explain that large charities in certain geographic regions and certain charity areas have median salaries even larger. Bottom line, it's really not appropriate or relevant to compare the CEO's salary to Social Security checks.

Anyway, I think this is enough of a tangent from the original subject of this thread. I do appreciate the link, and will dig deeper into those reports in the future. But for now I don't see anything about NMSS that suggests they're misusing my donations.

Scut, I think the point is about whether the charity meets its stated purpose and objectives. The money that passes through the charity needs to be assessed, where does it go and what does that money achieve in relationship to the stated purpose.If you aren't achieving the purpose then what is the charity?

well-meaning donors sometimes fail to consider that these CEOs are running multi-multi-million dollar operations that endeavor to change the world

There may be million-dollar organizations which don't spend money well. In that case, the CEO's salary is part of a larger problem. They may be aiming to change the world, but their aim is bad, such as investing donated money in questionable drug companies.

Anyway I doubt serious donors fail to consider the world-changing ambitions of a charity, however realistic. CEO salaries are probably some function of the dollar throughput, like bankers' salaries.

ScutFarkus wrote:"Program Expenses Growth" rating downgrades a charity if the total amount they spend on services decreases or grows too slowly, even if this is a result of their overall budget decreasing or growing slowly. I don't get that.

I don't get that, either.

Bottom line, it's really not appropriate or relevant to compare the CEO's salary to Social Security checks.

It's appropriate and relevant to me. My dollars are few these days, so I especially want each donated dollar to be given to a well-run charity as defined by me. I don't mind paying 'market' rates for a good executive, but I don't like paying 'market' rates for sub-par, stagnant performance. As I said, executive compensation should include ties to specific criteria, such as 'program expenses.'

Who is online

This site does not offer, or claim to offer, medical, legal, or professional advice.
All treatment decisions should always be made with the full knowledge of your physicians.
This is MS does not create, endorse, or republish any content.
All postings are the responsibility of the poster. All logos and trademarks in this site are property of their respective owners. All users must respect our rules for intellectual property rights.